Hi, a new member asks
“I’m just curious how others educate their employers or those around them. I may look ok - but once I flare, I’m miserable”
Has anybody got any suggestions or support?
I would light a candle, take the employer by the hand and put his/her hand over the flame and tell him - that is how my feet/hand feel like right now and it will only go away if I can cool it and even then it may come right back again.
Is your employer open to "Lunch and Learn" or "Safety Moment" sessions? I have epilepsy also and my department head let me do a presentation on the topic as a "safety moment" during our regular monthly meeting. You might go at it that way. Many companies are required to do safety or other regular meetings and you might be able to get it in as a topic.
I don’t have this problem as I am self employed (no choice with this illness) but have you ever heard of the TEA association? They provide very useful, professionnal pamphlets
describing the illness and its devastating effects, you could maybe take one to work and educate your employer? Good luck!
I just explained the triggers and effects of a flare to my colleagues and boss. This worked well but i guess it depends on the employer, hopefully you will be able to get your point across so they can support you in your role. What is your occupation?
At first my employer thought I was overreacting. Until one day she witnessed the flare up and felt the heat radiating for my arms, hands and legs. She started to be more understanding about me having to come in a few minutes late because I couldnt walk that morning. I have told tell her I am a dedicated RN and love my job so don't think I am being lazy or non-compliant. I have also shown her pictures as well as given her literature regarding this condition.